Prominent Neurologist: "Lyme patients deserve same personalized approach to treatment as cancer patients"

11/20/2017 05:10 pm ET Updated Nov 20, 2017
Dr. Elena Frid participates in the<a rel="nofollow" href="http://lymediseasechallenge.org/" target="_blank"> Lyme Disease Cha
Dr. Elena Frid via Instagram: https://www.instagram.com/drelenafrid
Dr. Elena Frid participates in the Lyme Disease Challenge event to raise funds for research into tickborne illnesses.

Following is the second of a three-part interview with Dr. Elena Frid, a New York City-based neurologist and clinical neurophysiologist, autoimmune neurologist and adult & pediatric Lyme disease specialist: Facebook/Instagram @DrElenaFrid (Part one of our interview is available here.) In this installment, she discusses the potential role of underlying infections in autoimmune disease processes, concerns relating to tickborne diseases and blood donation, and the complexity that is Lyme disease overall.

I saw that a recent study describes a new discovery that Parkinson’s disease is “partly autoimmune.” Is that a new finding with respect to Parkinson’s disease? If it is, could that also crack open the door a little more with respect to Lyme disease? You have described Lyme as a multi-systemic illness that may be partially autoimmune, may include a persisting infection, and other complexities…

Dr. Frid: Absolutely. This is a new discovery for Parkinson’s disease. And honestly, our understanding of the immune system and the autoimmune phenomenon is evolving. Autoimmune encephalitis a diagnosis that came on the scene about 15 years ago is now becoming an important topic, and a number of big-name institution are investing in researching this disorder.

Bringing the conversation back to Lyme disease and associated disorders, I think that various infections can alter our immune system. Autoimmune phenomena that can arise in some patients may be induced by infections and some believe, like Dr. Charles Ray Jones, that this phenomenon occurs when one gets exposed to an organism that makes up a significant portion of one’s DNA leading to molecular mimicry and ultimately to an autoimmune process. A person can be predisposed to that process due to their genetic makeup.

Additionally, I suspect it’s not one tick bite that causes chronic Lyme/persistent Lyme disease symptoms. In my practice I often see recurrent exposure to various vector borne diseases with repeat insult to the immune system finally resulting in an autoimmune phenomenon. Borrelia burgdorferi, Lyme-causing bacteria, is not the only pathogen in question; many co-infections are at play in these patients as well. Therefore, if you have Borrelia burgdorferi that has been brewing in your body and your immune system has been able to handle it for years, at some point repeat exposure and stress to the immune system can trigger the development of an autoimmune disorder. In turn, for many patients this process is classified as post-treatment Lyme syndrome.

I’ve heard some infectious disease specialists talk about facets of the Lyme phenomenon that they discredit in various ways. One of those ways is to say that there’s a fanciful, complex story about how the Lyme bacteria work, which some people say is not realistic, not how bacteria work—that Lyme disease is a simple infection, it’s diagnosed with two simple blood tests, it’s treated simply with antibiotics, and then it’s cured. The common saying is “easy to diagnose, easy to cure.” And yet countless people nowadays who had once been diagnosed with and “cured” of Lyme are experiencing life-changing, long-term conditions, and in some cases it seems that because people had been previously treated for Lyme, doctors discount their worsening symptoms altogether as mental illness.

But researchers who have investigated the Lyme bacterium, along with research that discusses how the bacterium can morph physically, even exchange genes, suggest great biological complexity.

Twenty percent (20%) to 75 percent of C. diff infections recur after appearing to have been cured by antibiotic treatment.
Merck. See: http://www.biotechduediligence.com/blog/merck-mrk-c-difficile-program-notes-from-rd-day
Twenty percent (20%) to 75 percent of C. diff infections recur after appearing to have been cured by antibiotic treatment.

In April, someone close to me was in the hospital for 10 days with a life-threatening case of the bacterial “superbug” Clostridium difficile. She was down to 83 pounds and was extremely ill. She was treated with the antibiotics metronidazole and vancomycin. Those failed, and the antibiotics actually seemed to have made the infection worse. Ultimately, she recovered following a fecal microbiota transplant, and the hospital told her she’ll have to be very careful taking antibiotics from now on because the C. diff. will persist in her digestive tract, and if the balance of gut bacteria goes off, she could become dangerously ill again. In effect, the hospital told her that after she’s “cured” and resumes her life, the bacteria will remain in her gut, controlled by healthful bacteria, but the infection can come back again even following the “cure.” If she takes antibiotics, for example, this bacterial infection can “come back.” And yet Lyme patients are told regularly that once a person has been cured of the bacterial infection, he or she is cured for good.

Even disregarding the belief that antibiotics cure patients’ present infections permanently in all cases, some doctors seem to think, irrationally, that once a patient has been treated for Lyme disease, Lyme disease is no longer a risk. The first neurologist who was evaluating me for what he suspected to be multiple sclerosis asked if I had ever had Lyme disease; I told him that I had been diagnosed it and treated for it 15 years prior, and he said, “Oh, good, then you don’t have it now.” It didn’t occur to me, and it didn’t seem to have occurred to him, that living in a Lyme-prevalent area might result in a repeat infection. In retrospect, that seems remarkably shortsighted.

Given that certain bacteria such as C. diff. do behave in complex ways and that they can persist following antibiotics and following other interventions, where do you think the resistance comes from in accepting evidence that some cases of Lyme infection can resist or survive short-term antibiotic treatment? Is it from a lack of evidence of persistence in human subjects, even though it’s been documented in vitro (petri dishes)? Or is it just resistance to the notion?

Actually there have been human subjects. Dr. Liegner’s case was very well documented. Tessa Gardner has published a chapter on Lyme disease in Infectious Diseases of the Fetus and Newborn Infant 4th and 5th editions where she discusses vertical transmission of Lyme disease, mother to babe, with the infection being dormant in some cases for up to 2 years. I understand these publications were over a decade ago, but they are still valid. Additionally, I have looked into whether Lyme patients can donate blood. The CDC website doesn’t answer that question. They refer you to the Red Cross. The Red Cross also does not answer that question—but it does say if somebody has Babesia, a common Lyme disease coinfection, they are not able to donate blood. If, for example, you have malaria, even if you’ve been to a malaria-endemic country, you’re not allowed to donate blood for a year. Or if you’ve had malaria, you’re not allowed to donate blood for five years after treatment. Babesia is a coinfection of Lyme disease—we haven’t touched on that what we call Lyme disease is often more than one infection. This is an indirect way of talking about the reality that these infections can persist. But when we talk about patient care directly, the common assumption is that Lyme is always treated within 30 days or three weeks of antibiotics.

[Note: The Red Cross does not test blood for Lyme disease, and is conducting a limited investigational screening for Babesiosis. Babesia infections contracted through blood transfusions have been fatal, such as the 2015 case of former New Jersey First Lady Jean Byrne.]

I have looked into the blood donation issue for other personal reasons. I am gay and not allowed to donate blood because of my sexual orientation unless I attest that I have been celibate for at least 12 months. There’s a national ban on blood from gay men, a legacy of the HIV/AIDS crisis. The issue continues to be discussed in news media following mass shootings that result in blood shortages, yet irrational phobias outweigh science in the making and the 2010 upholding of this discriminatory federal policy. The ban persists despite almost 100 percent accurate HIV tests, and despite the knowledge that gay men are not exclusively susceptible to contracting or transmitting HIV—which has the effect of reminding gay men that we’re still considered “tainted” in many respects.

But I digress…

You and I were in Canada’s capital city, Ottawa, last spring to participate in a national Lyme awareness event called Voices of Canadians About Lyme, or VOCAL Ottawa. Following the event, I looked into the blood issue in Canada, as well, because Canada’s health minister, Jane Philpott, was busily raising awareness about the need for blood donations via social media as she was being criticized by Canadians loud calls to do more to help Lyme disease patients. Canadians who have Lyme disease raised questions on Philpott’s social media accounts about whether the country tests donated blood for Lyme and associated tickborne infections, which the federal government of Canada has identified as an imminent public health emergency, with “80 percent of the population of Eastern and Central Canada” expected to be at risk for Lyme by 2020.

Canada doesn’t ask whether a potential blood donor has or has been diagnosed with tickborne diseases, including Babesia, which is known to be transmitted via blood transfusions; however, according to this screening questionnaire, Canada will not accept blood from people who live with multiple sclerosis, which is not thought to be a transmittable disease.

Screen capture of <a rel="nofollow" href="https://screen%20capture%20of%20canadian%20blood%20services%20website%2C%20https/bl
Canadian Blood Services
Screen capture of Canadian Blood Services website, showing that multiple sclerosis patients are ineligible to donate blood for undisclosed reasons. The United Kingdom also prohibits blood and bone marrow donations from MS patients. According to the Multiple Sclerosis Trust, ”This is a blanket ban that applies to 'chronic conditions of unknown aetiology and includes a range of other conditions such as rheumatoid arthritis.” MS patients can donate blood in the U.S., according to the National Multiple Sclerosis Society.

This is a major tangent, but I found it interesting and strange, and the reason I mention it is because it calls into question a lot of conventional knowledge.

It would seem to be that when there is a risk of transmitting any disease via blood, the best public health approach would be to be as conservative as possible. For example, as mentioned earlier, a former first lady of New Jersey died from a Babesia infection that she contracted from a blood transfusion. New Jersey is only 500 miles from Toronto, so to ignore the possibility of this happening there seems foolhardy. And it would seem to me that if scientists truly are confident that multiple sclerosis is an autoimmune condition that cannot be spread among human beings, there’s absolutely no scientific basis for banning blood donations from people who have multiple sclerosis. (The United Kingdom states it bans blood donations from MS patients because the cause of MS is unknown and it may be transmittable via blood; however, Canada allows blood donations from people who have fibromyalgia, another presumably autoimmune disease of unknown origin.)

And so it seems to me that policies that have profound public health implications are not always based on medical evidence—unless these governmental agencies are privy to information that the public is notbut instead on fears that are not substantiated by science.

A couple of years ago when I was going through the diagnostic process, doctors suspected I may have multiple sclerosis. I was reading all I could about MS at the time, trying to understand what I might be in for, and after my Lyme diagnosis I remembered having come across maps of the global distribution of MS, which is unexplained considering that it’s autoimmune and the origin is unknown. Have you ever looked at the maps of global distribution of Lyme compared to the global distribution of MS?

I did not, but I’m assuming you did…

I did. And I sent them to several national MS organizations and asked if they’d ever looked into a potential relationship because the maps that show global incidences of both disease are strikingly similar. Representatives from two organizations wrote back and told me they had looked into it in the past and determined that any possible connection has been conclusively disproved. [The National MS Society states that “MS is not contagious or directly inherited.”] One took a long time to reply and the communications person told me that she was told “we wouldn’t touch this with a ten-foot pole,” which was so bizarre to me. The distributions overlap almost exactly…

Coincidental distributions of (top) multiple sclerosis and (bottom) Lyme disease. Red areas of both maps represent the areas
Sources: Lymedisease.net and NASA
Coincidental distributions of (top) multiple sclerosis and (bottom) Lyme disease. Red areas of both maps represent the areas where the respective diseases are most prevalent. (Note: The Lyme disease map represents national political borders—e.g., Alaska is shaded along with the rest of the United States even though Alaska has not been significantly affected by Lyme disease do date, whereas the multiple sclerosis map appears to reflect prevalence of MS without respect to geopolitical borders.)

The question of an infectious cause for MS has been raised multiple times, and it has not been put to bed. It’s been investigated whether a viral infection is the cause. They were looking into Epstein-Barr viruses, and from my perspective, it’s something that needs to be looked into and studied further. And that is exactly where funding that we’ve been asking for needs to go.

A big question I have about the June Morbidity and Mortality Weekly Report warning about the effects of treating chronic Lyme disease is that the CDC selected five isolated incidents of healthcare-associated infections to represent all chronic Lyme disease treatment cases. However, the overall prevalence of healthcare-associated infections is enormous. Does it make any sense to you that five cases of Lyme treatment-associated infections were selected when approximately 2 million cases of hospital-associated infections occur annually in the U.S., resulting in nearly 90,000 deaths?

I was actually looking into a report of Lorraine Johnson and Dr. Raphael Stricker looking at 200 Lyme disease cases treated with antibiotics, and they concluded that the complications from treatment of chronic Lyme disease with antibiotics, percentage wise, are no different than treatment of other infections. So I appreciate that they singled out these cases, but the outcomes appear to be no different than with other infections. The complication rate is absolutely equal.

Thank you for pointing this out.

We should be doing better—but we should do better across the board.

From the perspective of a Lyme disease patient, it seems unjust. You’ve said—I’m paraphrasing—that the Lyme disease epidemic is a human rights concern. Can you talk what you mean by that?

By ignoring this disease, we are contributing to senseless human suffering. Suffering of children and young adults, the majority of those who are affected by this disease, who lose their lifestyle, livelihood and even their lives to this disease.

Instead of showing them compassion and solidarity, these patients are often ostracized by the medical community, family and friends under the stigma of various mental health disorders.

They are left to fend for themselves isolated and paralyzed by their disease.

At best, many of them will navigate through life with some level of impairment or disability without the ability to achieve their genetic potential.

Instead of standing up for them through medical research and funding, we ignore their cries and label their symptoms and complaints as psychiatric.

Do you ever encounter critics, people who disagree with you, and have conversations with them about your point of view versus their points of view that this is more than a black-and-white, cut-and-dry thing? I guess they would say that your opinion about this is wrong. So what would you say to those people?

To be honest, the way I tackle this issue is by educating physicians. I have spoken at my alma mater to medical students about the complexity of Lyme disease. I have spoken on national and international stage, to both patients and physicians educating people about how much we don’t know about this disease and how much more needs to be done in order to be able to serve this patient population adequately.

I have presented my own data and data from my colleagues and predecessors who have done a lot of work with Lyme patients.

I advocate for patient-centric approach which is part of how we should be practicing evidence based medicine.

At the center of our treatments, trials, and protocols should be our patients. We should let the guidelines guide us but not replace and ignore what we see in the office in front of us. We need to move into the direction of personalized medicine.

Lyme patients deserve the same personalized approach to their treatment as cancer patients. We study cancer genetics in order to come up with the right treatment protocols for various malignancies. Lyme disease can be a chronic and heterogeneous illness that affects patients in many different ways and so our advances in medicine including gene therapy should be implemented in this patient population which is one of the many things research should be focused on.

In the final installment of this interview, Dr. Frid and I will discuss the many obstacles confronting medical practitioners today, human and patient rights, and misrepresentation of Lyme disease patients in the media.

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